Raynaud's syndrome patient

 

At the first time, I met Ms. W, I could see she was very sick. A petite, old lady, sitting in a wheelchair, she was wrapped in layers of clothing and a pair of super heavy gloves, and had an urinary bag attached to her. She was accompanied by her sister.When the nurse checked her vital sign, she needed her sister’s help to remove her clothing to have her blood pressure taken. When the finger oximeter did not get her blood oxygen level, her sister suggested that it could be caused by the low temperature of her finger. So the nurse got a special instrument to check her blood oxygen level on her forehead.  

Ms. W was significantly underweight and weak, and the only other person I had seen in a comparable condition was an old lady with end-stage pancreatic cancer at the very end of her life. Her sister is a chatty person. Although her understanding of English was very limited, she always had many questions and requests for the conditions and treatment of her sister. It was obvious that she cared about her sister a lot.  

Because of her sister, I got to know some story of Ms. W. She graduated from a well-known University in mainland China with a bachelor’s degree in English. Before moving to the USA at least 20 years ago, she lived in Hongkong for many years. She was married with no children, and her husband also only had meager knowledge of English. Besides, both her husband and her sister have little computer skills. Therefore, before she became very sick, she was the person in her family to deal with English and computers. 

Ms. W. had a genetic condition called Raynaud’s syndrome, which means she is very sensitive to cold. If her hands were exposed to cold conditions for a little bit, it would become red or purple. Thus, she needed to wear gloves all the time, even inside of a building. Despite this condition, she was mostly healthy for most of her life. However, She became very sick in the last  two to three years, and her diseases involved many organs. Last year, she was hospitalized for more than one month. For a long time, doctors had difficulties diagnosing her, and she went back and forth among many specialists, such as rheumatologist, cardiologist, urologist et al. Finally, during her hospitalization, she got her diagnosis, scleroderma. This is a rare autoimmune disease,  causing the hardening of not only her skin, but also her blood vessels and internal organs, and in turn leading to the problems of her multiple organs.At present, she had many serious conditions, such as pulmonary fibrosis, rheumatoid arthritis, hematocytopenia, urinary retention et al. 

Because of her disease, Mr. W’s response was very slow, so she rarely spoke or made any movement. However, I remembered that at the end of one of her doctor visits, she asked the doctor in English if there was no hope for her disease, and if she was dying. Kneeling down in front of her wheelchair, the doctor told her that when she was hospitalized last year, her condition was so bad she was close to death. But at present, although she still had many problems, she was in fact much better now, and she was very lucky to have devoted caregivers, her sister and her husband. Ms. We knotted and both her sister and her husband had tears in their eyes. 

It is so hard to live with a horrible disease, but with devoted caregivers and great doctors, a person can get the best out of a dismal situation. Whenever I meet such a patient, I have a refreshed appreciation for life.